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'Suicide disease' makes every day torturous for Carlsbad woman

rare syndrome

By Valerie Cranston

Special for the Current-Argus

Posted:
08/11/2013 09:03:39 AM MDT

Valerie Cranston/Current-Argus
Makayla and Roland Cardona posed for a photo on the couch of their home with the family canine, Rocky. Makayla suffers from Complex Regional Pain Syndrome, a rare, debilitating disease that causes excruciating pain and has no cure. (null)

For sufferers of Complex Regional Pain Syndrome, known as CRPS, unbearable pain is a way of life. CRPS has been called the suicide disease because there is a high rate of suicide among sufferers who experience unimaginable pain every day, every hour, every minute, every second.

Makayla Cardona, 24, young wife and mother of two small girls, suffers from this rare, catastrophic, debilitating disease. Her entire body is consumed with burning, excruciating pain.

CRPS, also called reflex sympathetic dystrophy (RSD) syndrome, is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems. It is most common in people ages 20-35, affecting women more often than men, and some children.

Just a year ago, Makayla was a full-time wife and mother, employee and college student. In a matter of days, she went from a vital, healthy, active young woman to someone who couldn't take care of herself, her children or any aspect of her life.

"I am in constant pain 24/7 and the pain is on a whole different level than normal pain," said Makayla. "The only thing that doesn't hurt is the back of my head."

Looking at Makayla, one wouldn't think anything is wrong, but the pain from CRPS has been compared to a near 50 out of 10 on the McGill Pain Index Scale.

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"Sometimes I feel so hopeless," she added, noting most people don't have it spread throughout the entire body. Most often it starts and stays in a foot, a leg or an arm.

On Aug. 6, 2012, the top of her foot started swelling and began to hurt. The next day, she couldn't put a boot on. She went to see Dr. Derik Brown at Southeast New Mexico Podiatry. He examined her foot and applied an ice pack.

"Ice just shot the pain up and Dr. Brown said, 'I think this is what it is ... Complex Regional Pain Syndrome, but the only way to confirm is to do more testing,'" she said, adding nothing relieved her pain.

"It's pretty rare," said her husband Roland, adding they believe a couple of other people in Carlsbad suffer from CRPS.

Because it was taking so long to arrange for an MRI locally, she was sent to Lubbock. She remembers how painful it was removing her pants over the foot. Doctors in the emergency room there confirmed Brown's diagnosis. She came home and began physical therapy.

Makayla said Jane Cornwell, certified nurse practitioner, had her go the ER Trauma Center in Albuquerque. While waiting 10 hours in the ER, the disease spread across her shoulders and to her face. She was admitted for a week and put through a battery of tests.

On Oct. 12, doctors performed a sympathetic nerve block, which can relieve pain for weeks and possibly months. It only relieved her pain for 36 hours. She then underwent a nerve conduction test that was also painful.

After a week, she begged to come home for daughter Rylan's fourth birthday.

"What one test showed was excess blood flow but not return flow," she said.

"During that time, they ran every test imaginable," said Roland.

"There was just no rhyme nor reason for this," he added, noting she always took such good care of herself.

He added they were told that it would normally be 15-20 years for the disease to spread like it had on her in only two months.

"I was told mine was progressing faster than normal. It is rare for it (the disease) to cross from one side of the body to another," Makayla said, explaining she has been told that there are only a few known individuals who suffer from full-body CRPS.

The best description of the pain she could offer was to think of every vein in the body filled with lighter fluid and burning. If she steps on a crumb on the floor, it feels like a nail. It hurts to even wear clothing and the force of water under the shower is unbearable. Even lifting a water bottle hurts.

When cold weather sets in or the barometric pressure drops, her pain rises. Even a nice breeze, that most enjoy, causes her discomfort. A blood draw or having her blood pressure taken is painful and torture at best.

Insomnia seems to be the norm. Sleep often evades her and she experiences problems with sleep medications. She, at times, suffers from horrible cramps in her calves and legs at night and her husband helps her stretch them out. There was even a time she was experiencing shortness of breath and chest pain and passed out for two days.

"There is no explanation," said Roland, who is a nurse at Landsun Health Service Center. "That is the complexity of the disease -- the nervous system gone haywire."

"It has affected my digestive system and it is horribly painful to digest my food," said Makayla, describing it as the worst of the worst labor pains.

"It can continue spreading to internal organs and if it goes untreated, you can lose bone," she added.

Although most cases of CRPS result from some trauma or injury, hers did not.

Makayla tries to remain in good spirits and credits her husband for any smiles or laughter on any given day. She has family members, good friends and people from her church, the Church of Jesus Christ of Latter-day Saints, who come to help her with her children.

"She does the best she can," Roland said, noting that often isn't much.

She tries not to show her pain around Rylan, 4, and Madison, 2, so they don't worry so much about her.

"I do my best to just keep positive," Makayla said, noting the best chance for remission is in the first year and that has now passed.

"I can't deny my girls hugs, but we can't play and they can't climb on me. I've had to adapt the things I can do with them," she added, explaining they know to only crawl up on the couch and lie down near her.

"I can't even show Rylan how to jump rope," she said.

Currently Makayla is on an epilepsy drug to help calm her nervous system and a pain patch to help her tolerate wearing clothes. She works with Tory Smith at Carlsbad Physical Therapy and went to the CARC Farm for water therapy.

"I was trying water therapy hoping to keep range of motion," she said. "My insurance company cut me off, saying they didn't see any progress."

The only thing left for her to try are treatments of ketamine, which is a drug used in both human and veterinary medicine primarily for the induction and maintenance of general anesthesia. It is usually used in combination with a sedative.

The ketamine treatments would involve a five-day inpatient treatment costing $30,000. Boosters that follow have a price tag of $900 each. The treatment is not covered by insurance and must be paid in cash. Although the University of New Mexico Hospital hopes to offer the ketamine treatment in the future, there is no place in New Mexico that currently performs this type of treatment. She and her husband have to go out of state and that costs additional money.

"The treatment is resetting your nervous system and it takes five days," Makayla said. "There are no guarantees, but it is the best chance I have to regain even half a normal life."

"If the treatments don't work, I guess this is my life," she added, noting she can be seen crying often -- sometimes from sadness but mostly because of the excruciating pain.

"It has affected her memory," Roland said.

"It affects every decision and every thought every day," she said.

Loose fitting clothing is the choice of the day, although she did say no clothing would be better. She tries to stay optimistic and upbeat. She and her husband encourage each other with daily struggles -- she with the excruciating pain and he with work and home duties that often last well into the night.

Makayla faces each day with a level of bravery most of us can't fathom. She hasn't lost hope and won't give up on life even though it seems her body is giving up on her.

"I have a wonderful husband, family and friends and we have to stay positive for our girls," Makayla said.

How to help:
A medical account has been set up at Wells Fargo Bank in Makayla Cardona's name to help with treatments and expenses. The Complex Regional Pain Syndrome ketamine treatment she needs has a price tag of $30,000 plus booster treatments costing $900, as well as traveling expenses out of state. Anyone wishing to donate may do so by using account number No. 6781 in her name at Wells Fargo Bank. Any amount will be greatly appreciated.
Makayla's good friend, Kristin Sullivan, has added a link on Makayla's Facebook page for donations to Go Fund Me. That site can be accessed by going online to: www.gofundme.com/3pzr5s. The "CRPS Treatment for Makayla" page will come up and donating is easy by clicking the red "Donate" bar to the right.
Those wishing to follow her daily journal may do so by asking to be a Facebook friend of Makayla Cardona.